A New Kind of Mouth Sore

We don't yet know what kind of sores these are on Katie's tongue and on the roof of her mouth, but they hurt and they developed very shortly after leaving the hospital so no doctors have seen them yet. It looks like Thrush to us, but since we have never encountered it before, we can't be sure. You can click each image for a larger, close-up version. I'll post an update when we find out what this is.

Our Plans Changed in an Instant

In the last post I wrote that Katie was feeling good and was looking forward to a vacation of rest a play. We were even planning a trip to the mountain for a little skiing. That didn't happen. The night that I wrote that post, Katie became ill and was vomiting from 3am on. By 9am the next morning, she had a fever of 104.3 and we were off to the hospital. Our first stop was North Country Hospital where her blood counts revealed some serious underlying problems. Her total white blood count was .2 or 200, her ANC was nonexistent, and her hemoglobin was 7.4. Everything else was just as low. She was then loaded into an ambulance and sent to Fletcher Allen for further treatment.

Once at Fletcher Allen, Katie recieved mega-doses of antibiotics just in case, and a transfusion to get her numbers up and out of the dangerously low levels to which they had dropped. She was also given simultaneous doses of tylenol and ibuprofen to stop the fever from rising any higher. It hadn't responded to a dose of only tylenol earlier. Katie was then kept at Fletcher Allen as an in patient in the children's hospital for the next two nights until she no longer had a fever and her blood counts seemed like they were rising on their own. She was released from the hospital today.

Katie is still neutropenic and not allowed to go anywhere without a mask on, but since her body seems to be recovering and no longer in need of the IV fluids or other maintenance drugs, she was allowed to leave the hospital and finish her recovery at home. We didn't actually take her home tonight though, instead choosing to stay in Burlington one more night with Katie's Grandpa Art and Grandma Kathy. We brought her here directly from the hospital and she immediately took a 3 hour nap. It is hard to sleep well in the hospital with nurses checking on you around the clock.

Tomorrow morning, we will actually head for home where Katie will be allowed to spend the next couple of days until returning back to Fletcher Allen for a follow-up and her first half-strength doses of chemotherapy again.

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.

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.

Mouth Sores Return

Katie continues to struggle with cold symptoms and some apparent reactions to her medications. A mouth sore materialized on the outside of her lip yesterday morning. It was small, and though it hurt, Amy assured her that it was just dry skin on chapped lips. Then she applied Chap Stick and Katie screamed in pain. It was not a case of chapped lips, but the first of now 5 mouth sores that have appeared in the last 24 hours. The first has gotten considerably larger, and the other 4 are smaller, but developing. She has two more under her lip, up against her gum line under the first sore. Two others are developing on the inside of her cheek and don't appear to be bothering her yet.

With a combination of mouth sores and a cold, Katie stayed home from school today because she was feeling so tired and lethargic. She usually bounces out of bed in the morning, often acting far more awake than either Amy or I are feeling. This morning she wanted to stay in bed and sleep. We gave her an extra half hour and she appeared unconscious at the end of that half hour. It was hard to wake her up again and as we got her dressed and ready for school it became apparent that she wasn't going to be able to make it through the day. Amy called in sick and tucked Katie back into bed.

She got a lot of sleep today and is feeling a little better, but not 100%. I don't think this is over yet. It may be just beginning. With Christmas fast approaching, our goal again this year, just like last year, is to stay out of the hospital and be able to enjoy Christmas at home.

Birthday Surprise

Today is Katie's birthday, but the surprise is on all of us. Just before midnight last night, Katie began vomiting for no apparent reason. It continued through most of the night as Amy and I lost count of the number of trips that we made to the bathroom with her. I think the last trip was some time after 3am.

We slept as late as possible this morning, but a birthday breakfast at the local diner is, at the very least, postponed because when Katie did wake up, she woke up with an extremely low blood sugar and needed some food in her system ASAP. She is currently in the tub, washing away the smells of her late night activity and trying to perk up enough to enjoy her birthday. With any luck, her sudden nausea is a fluke and a momentary inconvenience instead of the beginning of something bigger.

She did receive her treatment, including an LP, last Thursday. At the time, the doctors noted that she had gained a pound and grown an inch which pushed her into the next steroid dosage category. They doubled the dose of steroids that she had to take for the next five days. We didn't see any noticeable gain in side effects except for her hunger, but who knows... Maybe this is related. She has, after all, been eating enough for a person twice her size for seven days now. Maybe her body just couldn't hold any more.

As we look forward to the rest of our day, our fingers are crossed.

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.

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.

The Common Cold

Things have been going reasonably well for Katie lately. She has been going about her normal routine of playing with her friends at daycare all day and zooming around the house playing at home each night. Markers and paint are her creative release of choice lately. Unfortunately, her body and her books have become her favorite canvas. She has colored or painted on herself and her books no less than eight times in the last ten days. I'll post some pictures the next time she gets creative.

In the last couple of days she has taken a turn for the worst. She developed a nasty cold over the weekend. It is restricting her airway again and making it hard for her to sleep at night. We can easily identify the source of this cold... Every kid in her day care suddenly got sick over the weekend. Unfortunately for Katie, while her body is busy fighting off this cold bug, we are going to give it more things to have to deal with. She has an appointment for another dose of Vincristine and Pentamadine this Thursday at Fletcher Allen. So, by the time she should be recovered from her cold, the Vincristine will be making her nauseous. Her doctors asked us to get a blood test done last night to ensure that her body had the resources to fight back, and it does. Her numbers look really good and all of the right numbers are elevated, indicating that she is fighting the cold. The next 10 to 14 days are just going to be a little extra rough.

Chemotherapy and a So-So Weekend

With Katie's numbers up, the chemotherapy resumed again starting Thursday. She had a dose of Vincristine (causes nausea) at the hospital, a dose of Zofran to combat the nausea, and a dose of her antibiotic, pentamidine. That night at home she got Methotrexate, Dexamethazone, and Mercaptopurine. All combined, a lot of chemicals went back into her body and that was just on Thursday. Friday, Saturday, and Sunday she continued to get Dexamethazone, Mercaptopurine, and Zofran. She has had a break from some of these drugs for quite some time now and she isn't used to handling them again. She spent most of her weekend just lying around on the couch or in bed. She didn't nap much, she just didn't feel good enough to get up and play. The few times that we tried to get her out, she told us she didn't feel good and just wanted to go back home. Tonight, after climbing into bed, she finally vomited for the first time since the drugs started going back in. Shortly afterward, she felt better.

Tomorrow, she goes back to daycare. Hopefully she will feel well enough to enjoy it because, even sick, she is still looking forward to seeing her friends.

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...

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.

Ushering in The New Year in The Hospital

Well, we managed to stay out of the hospital for Christmas, which was exactly what we wanted and all that we hoped for. Be that as it may, New Year's day was just spent at the hospital.

Katie had a New Year's eve chemotherapy appointment yesterday. The night before, she had run a low fever while sleeping and then vomited just once and only a very small amount that morning. That was our first sign that something wasn't right.

She received her scheduled chemotherapy and the doctors checked her over from head to toe while waiting for the blood counts to come back. The counts came back quickly and with disappointing results yet again. Katie's ANC had dropped again to 140. The doctor found nothing wrong with Katie other than her chapped lips which we explained had developed rapidly in just the last day. There was no explanation for the low grade fever, the vomiting, or the low ANC.

In the not so distant back of my mind I was starting to wonder if maybe the leukemia was coming back, but it was a fear that I didn't really want to address. However, I asked the question anyway. What could be causing all of this? The answer was that they don't know, but a resurgence of leukemia cells could potentially be responsible. The doctors want to pull some bone marrow Monday morning to see if that is the case. On the other hand, other possibilities do exist. Another is that the bone marrow may not be working correctly. Apparently, it is possible to permanently kill off certain functions of the bone marrow while leaving other functions fully operational. They want to study her marrow to make sure that the cells responsible for making neutrophils are still alive and well. The consequences of dysfunctional marrow are not something that I want to think about right now. Of course, there is also the ever present explanation that Katie could just be fighting off something that we haven't detected yet. That explanation, unfortunately, was starting to wear thin.

However, this morning, after another night of low grade fevers, we glimpsed a potential light at the end of the tunnel. This particular tunnel gets a little darker before it gets lighter. Katie woke up with a massive sore in her mouth and lips that look like the shed skin of a garter snake. If you want a closer look, click on the picture to the right. I uploaded the full sized picture for those of you who want a real good close-up.

This infection is a good thing. Finally, she has a real infection! Here is something that is treatable and potentially causing Katie's neutropenia. That is the upside; the light at the end of the tunnel. If this sore is finally identified as a manifestation of a systematic infection then that could be her only problem. Her marrow could be fine. Her leukemia could still be in remission. Things could still be OK.

But remember, the tunnel gets darker before it gets lighter. Katie is still neutropenic. She also now has a definite infection. That means she is now a resident at Fletcher Allen Hospital until the infection is under control and her ANC recovers. She was admitted today, New Year's day, and is now back in her old room again on the fifth floor of the Baird wing. Because of the open sore and the neutropenia, she will not be allowed to go to the play room and enjoy herself. She will be confined to an isolated room with Amy for the next few days unless she wears a protective mask and then she is only allowed to take a walk in the hall but not to touch anything. Nobody wants Katie to pass on whatever she has to the other children on the floor.

Katie is not all that happy about being back in the hospital. It was a surprise to all of us and she was not mentally prepared for it. She fought with the nurses as they accessed her port this afternoon and then went into a quite, protective state in which she ignores the world around her and just shuts down. She stares quietly off into space or at the TV but will not interact with the doctors or nurses. She even ignored Grandpa Art and Grandma Kathy when they came to visit tonight. I was able to perk her up a little when I called the room tonight to wish her a good night. At least she talked to me. Hopefully, this will be a short stay and the doctors will get this infection under control quickly.

I'm still anxiously waiting for the bone marrow test Monday, but I'm hoping this infection is the real source of her troubles and the end to some of our worries.

Pneumonia

We definitely do not update the blog as often as we should any more, but here is the latest. In our last post, I mentioned that Katie had some fluid in her lungs. Well, it turned into pneumonia. The ear infection she originally had cleared up right away but she did have to go back on a different antibiotic to fight off the pneumonia.

The strange thing about this case of pneumonia was that we couldn't even tell that she had pneumonia other than from the sound of fluid in her lungs. Her cough had almost vanished and she was capable of running and playing as if she was in perfect health. Either way, 5-days later, her pneumonia has also cleared up and her follow-up doctor's appointment today revealed no additional problems. She is perfectly healthy again.

Later this week, she has an appointment for a lumbar puncture and chemotherapy at Fletcher Allen. I don't expect any surprises from that visit, but any day involving an LP is going to be a long day and she isn't going to like it.

An Ear Infection and Fluid in Her Lungs

Katie and winter have never gotten along all that well. Each year, as the temperature drops, she begins coughing, wheezing, and having trouble sleeping at night. Eventually it gets bad enough that she has to use a nebulizer to break up the mucus in her lungs and allow her to breath easier. That is how we ended up discovering that she had leukemia last winter. She had been sick for several days and even the nebulizer wasn't helping her to fight it off. She was exhausted from lack of sleep, and as we discovered at the hospital, lack of red blood cells. We had become so accustomed to her being sick that it was only after she really took a turn for the worst that we took her to the doctor.

This year, we are having none of it. Katie began coughing again as soon as we had a few cold days in a row and we began listening to her breathing very carefully. She was wheezing a little, but it all seemed to be upper respritory. A few days later it was worse. She was still coughing and wheezing more and it was sounding deeper in her chest. We used the nebulizer but it didn't seem to have any effect. So we took her to the doctor.

As it turns out, she has an upper respritory infection, and her lungs do sound like they have some mucus in them. She also has a bad ear infection that she has not complained about. After having sorted all of that out and taken a trip to the pharmacy, she was back home with a new bottle of Amoxicylin. Lets hope she gets better quickly and can stay strong and healthy for the foreseeable future.

Revisited by Croup

Katie came down with a case of the croup again the other day, coughing loudly and uncontrollably for hours on end. Luckily the worst of it was over in under 24 hours and she only lost one night of sleep. The coughing was not even slowed by vapor rubs, hot showers, humidifiers, or a drink. We did manage to find one home remedy that appeared to work. Cold air seems to do the trick. If we took her outside for even 5 minutes, she stopped coughing. Once she stopped coughing and relaxed for a bit, she was fine to go back inside.
Now she seems to be fine. A little cough is lingering, but nothing like what she was suffering from.

Better Then Worse

Katie was feeling good yesterday. Amy was feeling a bit better yesterday morning too. But by yesterday afternoon, Amy was feeling worse than she had the day before and Katie was coughing more again. By this morning, Katie was pretty cranky and upset because her throat hurt but that was pretty much her only complaint and Amy was still functioning enough to go to school. Josh and I are still feeling fine.

Getting Sick For Real

Katie was sick last night. She kept me up most of the night, running a low grade fever until it finally culminated in her vomiting this morning at around 7am. She is feeling much better now, but what a rough night. Amy was also sick last night. She came home from work, drank some cough medicine and crawled into bed. It was no later than 6pm and she never got out of bed again until this morning. On the positive side, this is the first time in a long time that Katie has been truly sick and it wasn't being caused by some drug that we had to give her. This time, it was just some kind of stomach bug.